Let's face it, I'm woefully behind on blog posts. This is for two reasons: 1) my hands are killing me thanks to some kind of mystery arthritis that none of my doctors are too concerned about, despite its significantly affecting my ability to type, cut food, etc., funtimes always. And 2) I have such a backlog of posts going I barely know where to begin! The first I can't seem to do much about right now, but the second I can - so let's get to it!

Firstly, that 4th post in my "A calmer mind" series (that is so long ago you've all forgotten about it by now), well...that isn't going to happen. Moving on! Secondly, it's long past time I pull together the results of healthcare experiences survey. That's what I'm gonna do right now so I can share it with you, and move on to hopefully posting some more frequent but shorter (and thus hand-friendly!) blog posts again.

Thank you so much to everyone who completed the survey. I was amazed at the response it got, and was surprised by some of the answers and the ways they did and didn't match up with my own experiences. Please note the responses were completely anonymous and did not contain any identifying information (such as names, email, etc.), though I have my suspicions about a couple of them being friends of mine I did not ask/confirm whether they were. I also did not ask for people to submit info about their specific health conditions, as I wanted to focus more on their healthcare/practitioner experiences than their specific diagnoses.

I've been putting off writing an update for so long that I barely know where to begin. This will necessarily be rife with omissions... And just FYI I finally crunched the data on the healthcare experiences survey I had posted (it's now closed to new entries). Thanks so much to everyone who responded! I had some interesting results and am looking forward to sharing them soon!

It's been a weird summer - things have been pretty apocalyptic. Plagues (bad chronic illness flares for me, plus Bruno and I both had a bad cold/flu virus a few weeks ago - fevers and snot galore), locusts (we keep getting explosions of maggots in our compost bin because of the heat, and they got into our garage), crazy weather (namely the incessant heatwave, though we've finally got a little break from that, but also the couple days of thick forest fire smoke)... It's been one thing after another.

I have SO much to update you all on, but I'm still working through how/what to tell you... But in the meantime, I've had some more pretty awful experiences lately with doctors, and it led me to wanting to hear more from all of you about your experiences. So I put together this anonymous survey, and I really hope you'll fill it in and share it with any of your friends who are chronically ill, mentally ill, or disabled.

I don't want to write this post, but I'm going to anyway, because yesterday led to me completely losing my shit at a medical appointment. I left uncontrollably sobbing, shaking...and not even from the extremely painful medical test I had, but from how much lack of compassion and actual caring there was around providing me the recommended treatment.

I've been keeping most of my medical traumas private for a while now (aside from what I put in issue 2 of my zine), after being shamed and judged by several people for talking about my health related experiences. But I'm working on overcoming the feeling that I need to keep quiet about these experiences, because I feel it's an important part of demystifying chronic illness and advocating for better understanding and care, for me and others who are sick or disabled. I don't want to let the judgment and shaming of a few people silence me, so I have to keep telling my story.

It's been a really bizarre few months here, not just because of the freakishly early spring we're experiencing in Vancouver, while the rest of the country is under a snowbank. They've kind of passed in a blur. The family emergency in December and January was really stressful and made me brutally sick, but I'm finally starting to get back to closer to whatever passes for stable these days. It also led to me reconnecting with some family members I hadn't been in touch with in a long time, including one of my parents. Some positive things have come out of it all, but it's been kind of up and down and overwhelming. It's a lot to get used to right now, and I don't really want to get ahead of myself because it's too easy to assume things will keep going in one direction or another, when it's all totally unpredictable. My feelings about so much of it are totally all over the place and far from clear...and I don't even really care to work them out at the moment.

I haven't had a lot of time or energy to give to the whole thing, as I've had to yet again completely shelve everything aside from the bare necessities so I could focus on trying to get back on my feet again. I'm behind on so many things - but they have to wait. Emails being put off, my supposedly monthly newsletter that I've had a ton of signups for but haven't sent out since before the holidays, sewing projects that have been sitting in a pile untouched, the web project/business Bruno and I have been talking about and wanting to develop, even less-essential health appointments... I'm pacing myself heavily, and they all have to wait - maybe for a long time to come.

Hi nice people! I had a really crazy December and January, dealing with a family emergency and then working on recovering from the terrible health flare that it set off...one of the worst bits of which is my hand/finger joint pain went through the roof, making typing something I've been having to moderate even more than usual. But just the last few days I've been starting to see some light at the end of the tunnel, something I always find uplifting after a long slog through flare-ville.

Lots more to catch up on, but for now I just wanted to share some neat stuff I've come across recently in the textile and sewing world...

I guess the end of the year is as good a time as any for this big, nay enormous, long overdue health (and life) update - how appropriate that this is (in Drupal-speak) "node 1000", aka. the 1000th post on this site! December just had some surprises in store for us, and I got a bit sidetracked and wanted to get this one done first.

You may not have noticed but over the past couple years, even though I've continued to write posts about health and chronic illness, most of them haven't been particularly specific to what's actually been going on with me. I've written a few posts about my throat issues and adrenal fatigue, but otherwise I've been sticking to more general conversations about the ins and outs of living with chronic illness. I wish I could tell you that this was simply because of my commitment to speaking out about chronic illness, but that would be leaving out a significant portion of the truth. The truth is harder to talk about and more complex.

My desire to keep personal details hush hush has unfortunately really cramped my ability to write about many topics that I have a deep desire to write about. Specific health issues, work plans, personal/family relationship stuff... I've been thinking long and hard about this, and have waffled back and forth several times about it, and have finally decided that it's time I just have out with it all so I can get back to really talking about all the things I want to here.

The thing that struck me most about the segment was how you seemed to think this issue was funny, or not so much funny, but a bit of a joke. Several of the people interviewed on the issue brushed it off, saying "just hold it" or "be more prepared" or some variation of that response. That indifference was the main sentiment of the bit was baffling, and something I could only chalk up to either complete ignorance, or less offensively, lazy reporting.

Fact of the matter is that the lack of public washrooms in Vancouver, and specifically in the transit hubs and skytrain stations, is an enormous barriers to a large variety of people. The elderly, people with bowel and bladder problems, and of course children, all have varying abilities to "just hold it". It's not a joke, it's not funny - it has a severe impact on peoples' lives.

Have you seen the documentary "The Punk Singer" yet?? It's on Netflix right now, and I loved it. A lot.

Some of you, particularly music lovers, will know who Kathleen Hanna is - she was lead singer of Bikini Kill and Le Tigre, and currently fronts (The) Julie Ruin. She was also one of the founders of the Riot Grrrl movement, which teenaged me growing up in Saskatchewan miraculously had some tiny window into, thanks to lots of MuchMusic, Sassy, and zines.

I was familiar enough with a lot of the bands and history covered in this documentary, but I also learned so much more about everything and how it all ties together. I was enthralled watching through the first two thirds of the movie that detailed the movement and music history, and Kathleen's role in it.

But then the film takes a major turn - one I had no idea was coming, when it reveals that Kathleen Hanna has been struggling for several years with severe chronic illness, eventually to be diagnosed with chronic Lyme disease. She speaks so candidly about how the illness has changed her life - it was actually hard for me to watch parts of it, because I related all too much... I found myself tearing up as she said many things that I've been feeling, and that despite my best efforts, I've continued to habitually minimize and hide behind a brave face.

What an amazing, humanizing, project and video. Usually stuff like this rubs me the wrong way, but this felt different and lacked that exploitative quality (maybe because it's not a project specifically about disabled/chronically ill people?)

I love the way she talks about her body and her life so much - I can relate to her story even though her personal and health experiences are magnified by the severity and visibility of her illness, and the intensity of the history with her family...